In this episode, we talk to Mark Lukach, author of the book My Lovely Wife in the Psych Ward: A Memoir, about his experiences as the loved one of someone with new onset symptoms of mania, depression, suicidality, and psychosis. Mark tells us the story of his wife Giulia and how their future changed unexpectedly when they were 27 years old and she was first hospitalized on a psych ward.

He describes why he wrote his article and then his book (no other books on caregiving in a romantic relationship! and feelings of loneliness), the response from others (including parents at his school!), and the role of writing in his marriage. He also shares it has been like in his relationship as a caregiver.

Mark details how he redefined what love is and the role of love in illness and pain, as well as learning to plan for a crisis in between crises. He also beautifully explains what’s it’s been like to be the caregiver and have his feelings and experience unacknowledged by so many—from her professionals to the mental health insurance system. He imagines what an ideal mental health system for caregivers might then look like—including redesigning the waiting room—and how maybe it could all be fixed with one word: inclusivity. Mark's website is here.

TRANSCRIPT

Welcome to Psyched. A podcast about psychiatry that covers everything from the foundational to the cutting edge, from the popular to the weird. Thanks for tuning in.

David Carreon: Hi this is David Carreon.

Jessi Gold: This is Jessi Gold.

David Carreon: And this is Psyched. Today we have Mark Lukach, a teacher and freelance writer. His work has been published in the New York Times,The Atlantic, Pacific Standard, Wired, and other publications. He's currently the 9th grade Dean at the Athenian school where he also teaches history. He lives with his wife, Giulia, and their sons in the San Francisco Bay area. Mark first wrote about Giulia in a New York Times Modern Love column, and again in a piece for Pacific Standard Magazine, which was the magazine's most read article in 2015.

David Carreon: Mark, thank you for joining us.

Mark Lukach: Sure thing, thanks so much for having me on. I really appreciate it.

David Carreon: Mark, tell us about this piece that you wrote about. What's the story behind it?

Mark Lukach: I actually don't initially identify as a writer. I really am a high school teacher, right? I met my wife Giulia when we were actually in our first week of college. It was very much puppy dog love at first sight, like chasing rainbows into the sunset kind of thing, you know? It just felt like a fairytale in many ways. We ended up getting married, pretty much directly out of college, and moved to California soon after that. I thought the future was set. I had this amazing woman who I was in love with, who I was married to, we were gonna have a family. I was doing my dream career of teaching high school history.

Then when we were 27, Giulia ended up having a psychotic episode. This was totally out of no where for us. It's onset was really disorienting and pretty terrifying, because we had no sense of what mental illness looked like. Giulia was definitely always really ambitious and had some perfectionist tendencies and could be hard on herself, but in no way would that, to me indicate ... I didn't expect or have any reason to expect that she was gonna end up having delusions and be fully paranoid and have to get hospitalized.

How it all went down was that, she ended up starting a new job and for whatever reason the combination of the work stress and the self imposed expectations, she kind of got paralyzed with anxiety at work and had a hard time doing even fairly menial tasks. Day to day emails, she would overthink everything, she'd forward them to me to proofread these two sentence emails and say, "I've been working on this for two hours, because I want to make sure it was just right." That was nothing like the Giulia that I had known before who was always so effective and efficient at work.

It started looking like that, and then it grew where she ended up experiencing ... she was having a hard time falling asleep. She lost her appetite, and then eventually she ended up not sleeping at all. I'm like, "What's going on. What's happening to you?" I actually had a friend who was getting a PhD in Psychiatry, and I checked in with him and he's like, "You know what, she's probably just adjusting to this new world, this new job." It was her most important job that she'd had.

So, we were kind of like, it's just situational, she's hopefully gonna settle in and adjust. I thought that was really good advice, but I had a hard time accepting that Giulia couldn't just figure it out. I was like, "Giulia, you're tired. You've been working hard, just go to sleep. I don't get it. Why can't you fall asleep if you're tired. And if you feel so upset, why can't you just relax and take it easy." I was really naive and unfortunately pretty unhelpful in that way too. I just thought, well when you're having a tough time, you take care of yourself, you get a good nights sleep, you step away from the stress, and then everything's gonna be okay.

It wasn't for her. She got rapidly worse. In the stop sleeping phase she ended up experiencing delusions. That's when I ended up taking her to the emergency room where they admitted her and said she was psychotic. I literally didn't even know what that word meant. I thought they meant she was like a psycho killer, or something, and so that she was dangerous. I didn't think she was actually dangerous to anybody, I just thought, this woman's really tired and really stressed out and needs to just rest.

My expectations of what was going to happen in the hospital were also very unrealistic. I thought that they would just give her the right pill or two and 48 hours later she'd be home and she'd be back at work within a few days. Just kinda back to herself. Instead, they experimented with a lot of different medications, she ended up being in the hospital for 23 days. I took that time off work. I actually took the semester off of teaching so that I could be there to support her through this.

She came home and was admitted to an outpatient program where at admission they said, "Our average time in here is like 4 to 6 weeks." And Giulia ended up being in that program for 9 months, just because they continued to struggle to find the right medication that could support her. I was thrust into the world of caregiving.

Your question was about writing. This is a really long answer to get to that because, when Giulia was hospitalized ... I'm a historian right? So I go and I research to find answers. I learned a lot about mental illness by reading books, researching the internet, et cetera.

I was really shocked to find that there was almost nothing out there about caregiving around mental illness, especially in the context of a romantic relationship. I did find some stuff about parents trying to support their children, which I think is really useful and mostly relevant, but I also think there's a really big different between a relationship between a parent and a child and a relationship between two partners who are trying to be equals. And who share a bank account and stuff like that.

I felt, of the many feelings that I had throughout this, just abject sadness and fear. All of it was compounded by the sense of loneliness. Even though I wasn't the only person in the world going through this, I sure felt like it, because I couldn't find anybody out there who was talking about it. I won't say that was my initial motivation to write about Giulia's mental health and my caregiving of it, but when she ended up getting out of that outpatient program, we had the idea that maybe our story could help people. That Giulia, if she was willing to share her experience, and if I was willing to share my experience as a caregiver, we could connect with people who also felt that sense of loneliness.

The first piece that I wrote was for the New York Times Modern Love column. It got published and it got a lot of attention, there's no question about it. I ended up getting a lot of emails because I think it struck a nerve with people who are like, I'm in a really similar situation, and I haven't found people who are writing about this.

Then, a few years later, I ended up working on a magazine piece that detailed not only Giulia's first episode, but also her second episode and how it was connected to the fact that we had become parents in the middle of it. That was called "My Lovely Wife in the Psych Ward." It was in Pacific Standard Magazine. I hate using this phrase, but for lack of a better term, that piece went viral. It had a few million reads within the first week of it. For a few weeks I was getting over 100 emails a day, and almost every single one of them said thank you for writing this, now here's my story. It was amazing to see how many other people felt that loneliness that I have felt.

That magazine article lead to me having the opportunity to turn it into a full book. The book's been out for about a year now. It's actually coming out in paperback in early May. It's had, what has been for me, a pretty similar effect, where it's just presented me with these amazing opportunities for me to speak to people who are also in a family dynamic that's impacted by mental illness. Whether it's someone who they themselves have been diagnosed, and I've gotten feed back that it's just given them a little bit of a sense of perspective on what their family members might go through. Or, the caregivers.

I'm so humbled that people have taken the time to read this, because the fact that its making people feel a little less alone is just such an amazing sense of like, yes, that's exactly what I wanted to do this for. Because, the tragedy of mental illness is that we are people who are scared to talk about it. Even though we are suffering and struggling, we add that extra layer of difficulty, because we think it's something that's too scary to share with your friends or share with others. As a result, you lose perspective on how many people are going through this. And how, if you actually do open up and talk about it, you can support each other, you can swap resources, you can share strategies, et cetera, et cetera.

Where we are today in 2018, Giulia has been hospitalized a total of 3 times. That first one was back in 2009, her second one was in 2012, and then the third was in 2014. They've all happened in the fall. They've all followed a very similar trajectory of starting with psychosis and then being followed by a very lengthy suicidal depression. Her official diagnosis is Bipolar 1. To support that, she's on Lithium, which has turned out to be really great for her. It feels like it helps to manage the illness without creating unwanted side effects.

We're cautiously optimistic that we have found a way to manage this in our lives. And to still get to be the type of individuals and family that we had always dreamed about. Giulia is back to thriving in her career, and that hasn't been an issue. I'm still a high school teacher. Our first born is almost 6 years old. And seven weeks ago, Giulia gave birth to our second child.

Jessi Gold: Congratulations.

Mark Lukach: Things are going really wonderful there. He's an awesome little guy, and Giulia loves being a mom. I never want to think, "Oh, this is behind us." Because, I know that Bipolar is a lifelong condition. There's always reason to have to be cautious. I do feel really hopeful that through these really difficult years we've learned how to care for ourselves and each other, so that her Bipolar does not have to be something that ruins our family. We fell like regardless of how many future hospitalizations there may be, we think that we can make it as a family. Again, you literally asked one question and I just took off and ran with it. I hope that's okay. That's the context of our family's story and the writing I've done about it.

David Carreon: Mark, thank you so much for telling us that story. It's such a powerful story, and one of the things that just strikes me about how you tell it, is you started the story with the puppy dog rainbows into the sunset love and that's apparent and palpable in the way you tell the story, that you are in love with your wife.

Mark Lukach: Yeah. I am. I don't know what else to say other than yes, I agree with you.

David Carreon: I love that. It's often hard for people, as we see people who have mental illnesses, it's often hard for them to ... for people outside of the field to realize that there are real lives and real stories, and people can get back to thriving. That doesn't always happen, but that happens.

Mark Lukach: Yeah, exactly.

David Carreon: It's such a good balance between yeah things are hard, but that doesn't change the fact that she's a person who you're in love with, who can be back to thriving despite some very serious challenges.

Mark Lukach: Yeah. Through her diagnosis I had to redefine what love is, and what caring for someone you love looks like because my original thought was when someone you love is in pain, you wrap them up in a bear hug and you become their cocoon against the harshness that is hurting them. I also thought that it meant problem solving. I thought, hey you're sad, so I'm gonna help you feel better. Hey you're feeling suicidal at this moment, I'm gonna change the topic so that you don't have to think about that and you can think about something else.

I had to learn in response to both of those views is, for the first one I really had to learn the limitations of myself. I saw a therapist though out this and she used to always say, the good news and the bad news is that you're just not that powerful. I had this expectation that as her husband I was going to fix her, which is ridiculous, but I still felt it. I had to let that go and trust the process a little bit more, still be fully informed and researched and in communication with the doctors as much as I could, but also understand that the human brain is way more complicated than something that just a bear hug can fix.

I think the other thing that I really had to learn was that when people are in pain they're not necessarily looking for a problem solver. If I'm having a crappy day, and I want to talk with someone about it, it's not necessarily helpful for them to be like, well let's come up with a five point plan for how to make your day go better. A lot of times what people are actually just looking for is someone who's gonna sit back and listen to them, and not judge them, but just let them feel that way. And that the mere acknowledgement of your pain can help to heal that pain.